Early signs our family is Neurodivergent

Blogging is new to me and I’ve been wondering where to start 🤔

I thought a short summary of the early signs we had that our eldest son is Autistic, our road to his diagnosis and possible early signs that our youngest son could be Autistic too might be good. It’s an intro to our journey and might help another family on the same journey as us. 

I have been a bit skeptical about using our sons full names here, from a safeguarding perspective, as they are so young, so for now I’m just using their first initials. 

T - The Early Signs 

T was born two days into lockdown, which meant we didn’t really mix socially at baby groups until he was over a year old. Everything was either socially distanced or online. Consequently a lot of the earlier signs we had, that T is Autistic, were put down to social environments being completely new and/or lack of social contact.

When I look back now there were signs that he was struggling with sensory overload, but I didn’t know much about sensory processing then, so I didn’t always recognise the signs for what they were. The old adage of ‘you don’t know what you don’t know’ seems to apply a lot to our journey. I really had very little awareness of Autism and am appalled at how ignorant I was (I’m learning every day). 

On taking T to view a nusery setting I explained that he hadn’t started nursery because I felt like he might be misunderstood (he was 2.5 years at the time). He is the kindest, sweetest, funniest little boy, but he has a propensity to suddenly lash out at other children and adults when he becomes overwhelmed. The build up is not always really obvious, it can be very subtle and people make an assumption that he is being naughty or badly behaved. He is not. 

When I started learning more about Autism, I was trying to decipher whether T was Autistic. It was very confusing, there are so many documented early signs that didn’t seem to fit, but so many behaviours that did. For example:

• T never exhibited an issue with eye contact
• In the early days we didn’t see a lot of obvious stimming (we see more now)
• T didn’t line up toys
• T has always had a very advanced language/vocabulary skills

The early signs we had that T was Autistic or could have concurring conditions were:

• Becoming distressed at certain sounds
• Behaviour elevating very quickly at playgroups or in settings where there was an expectation to mix with other children and/or share toys
• Repeated head butting of furniture, floor or walls when distressed 
• Biting, head butting and hitting me when distressed 
• Unable to tolerate many foods and food types (e.g. messy food)
• Disturbed sleep and difficulty sleeping if his sleep routine was disturbed at all
• Little interest in playing with other children
• Difficulty sharing toys with other children
• Heightened sensitivity to some clothes and shoes
• Heightened sensitivity to having teeth brushed, nails cut or hair brushed
• Heightened sensitivity to anything sticky or ‘messy’
• Unable to sit down or still for meal times 
• Seldom expresses being hungry or thirsty or cold or hot 
• Special interest in Diggers, Construction and all things red
• Special Interest in the action of digging 
• Walking on tiptoes when excited 
• Struggling with unexpected changes or changes to routine
• Unable to comply with demands (e.g. put your shoes on)
• Extremely literal 

I have never felt that T is badly behaved, although other people treated him that way and made comments on our parenting, it never felt right to me. It used to really irritate me when he was called ‘attention seeking’ too, as I didn’t feel like that was it either. This journey is teaching me to trust my instincts and believe in Intuition, there is a reason we have them. 

We now understand that the behaviours I’ve listed above were, and are, his way of communicating that there is something wrong in his environment. They are indicators that we, as his primary carers, need to change something for him e.g. leaving an environment, taking a break. 

Understanding more about T’s needs and diagnosis

We chose to go private to try and make sure that we got on the right sort of path before T starts school in September this year (as wait times for the NHS are approx. 2+ years). It was expensive and only just within our reach, but we decided to try and make it work. 

Timeline to diagnosis 

• 2020 - T was born at the start of the first Covid lockdown
• September 2022 - T started nursery aged 2.5
• Jan/Feb 2023 - Our first meeting with nursery to discuss any additional needs T might have
• May/June 2023 - We had a private Cognitive Development Assessment carried out by Sussex Neurodiversity Practice 
• September 2023 - T was diagnosed Autistic and PDA (by Sussex Autism Assessments)

The Cognitive Development report was extremely helpful to us, as it gave us a really good idea of what we could do to start helping T, what might be more or less challenging for him and highlighted that he was potentially displaying signs of Autism and PDA. It was key in getting T seen for diagnosis before his fourth birthday too (otherwise we could have had to wait until after he was four or six years old).

Lauren at Sussex Neurodiversity practice and Andrew and the team at Sussex Autism Assessments were both fantastic. We highly recommend them both. 

The main reason that we looked to book a diagnosis so quickly was that we wanted to confirm whether T was a PDA’er, as Pathological Demand Avoidance (PDA) significantly alters some of the recommended parenting/caring approaches. 

T is Autistic (ASD) and PDA. 

What I didn’t realise is that a diagnosis does not help pin point how he is affected by sensory processing. T’s diagnosis refers to ‘sensory sensitivities’ but that is all. There is a different diagnosis required for more insight into sensory processing (SPD), which we’re currently looking into. 

Did diagnosis change anything? 

It has often been suggested to us that diagnosis is just be a piece of paper and shouldn’t make a difference to how T’s needs are recognised or provisioned, which I agree is how it should be, but in reality I think it did change things for us.

I certainly felt that the way other people engaged and engage with us about his needs shifted. Instead of talking about ‘perceived’ needs we could talk about his needs in more definite terms (based on observations and diagnosis). It has certainly given me more confidence in advocating for him too and has meant that we could focus our learning efforts in the right direction. 

The nursery T is at have been great, very supportive, both before and after diagnosis. T is the first child (ever) at his nursery to have attended and been diagnosed PDA, so in his own small corner of the universe he has already become a catalyst for positive change and a ‘trailblazer’ of sorts. Hopefully the next PDAer that attends his nursery will benefit from the lessons learnt with T and, I hope, I can use the things I am learning to help others. 

In terms of other support, diagnosis hasn’t changed the support we have been offered, but it did give us some very valuable suggestions on literature to read and/or places to look for additional support. I’ve found that so much of this journey requires us, as parents or carers, to be hugely proactive, which, at times can feel very challenging. 

There have been a few occasions where T’s Autistic diagnosis has been referred to as a label. I don’t see it as a label at all, more as a pointer to, or explanation of, his needs and a part of who he is. He is Autistic, he is PDA, he is disabled and he is a fantastic human being. 

We would love for T to be able to grow up with a positive Autistic Identity, happy and confident that being Autistic is a valuable part of what makes him wonderful and unique and able to advocate for himself and his needs when it’s necessary. We hope, in the future, he will be able to say he is Autistic without feeling any shame or stigma at all, although I fear that society, in general, is not quite there yet. This makes finding him a ‘tribe’, where he can be his authentic self, so important to us.

O - Early Signs?

We recently went through the Ages and Stages Questionnaire (ASQ) with our Health Visitor for O, as we’ve felt that he’s shown some signs that he may be Autistic too since he was around 12-18 months old. I think I’m correct in saying that the ASQ score for referral to Child Development (CDC) is 65+. O scored 105 (the same or similar to T). 

O is only just two, so he is still in that stage of toddler development and some things we’ve noticed could be developmental. I’d rather be on the pathway to diagnosis now than wait and be a year behind though, especially with NHS wait times the way they are. 

O and T are very different people, entirely different personalities and, if O is Neurodivergent, whilst there are similarities in the early signs that I’ve listed, I feel that they will have quite different Neurodivergent profiles. We are all unique after all, no human being, no matter their Neuro-type is the same as another. 

O, like his big brother, has never exhibited an obvious issue with eye contact and has advanced language/vocabulary skills. The early signs we think could indicate that O is Autistic too, and/or may have concurring conditions, are: 

O has never exhibited any head butting like T did. That is a marked difference, but the environments and routines we’ve exposed O to, as a result of T’s needs, are markedly different too. There’s no doubt that this will have had an impact on O and, perhaps, it has been really valuable for him. 

It will be a while until we look to get a Cognitive Development report carried out for O, but I expect we will (finances allowing), because it was so insightful for us with T. It would have been valuable if he wasn’t Autistic.

We hope that we’ll have a better chance at an NHS diagnosis date for O, which will fall before he starts school, but we’ll have to wait and see. We can only hope 

A little ‘side note’

I have become acutely aware of how little I previously understood Ableism and, at this point, I feel that I’m still in the process of understanding how engrained it is in my thinking, in relation to Autism (all Neurodiversity) and all disabilities.

I hope that I have used accepting and inclusive language here, as acceptance and inclusion is so fundamental to our young family. I am working hard to educate myself. Please be kind if I don’t get something right, I am a working hard to learn. 

 I hope this information is helpful to another parent or carer on the same journey that we’ve been on. My aim in starting this blog is to share information that could help another family like ours ❤️💜